KC management

[chursy]

Hi

I got cxl in my left eye done in September at the Moorfields. I went and saw the consultant after three months and told all is normal after the pentagram and eye tests. Vision is the same as what it was pre surgery.

I had the following queries

1) referred to the KC clinics to monitor this every 6 months where they do the pentagam and eye test. To monitor signs of progression in my right. My right eye is good with no astigmatism as of now. Is six months normal ? Or should this be more frequent ?

2) does it make sense getting cxl on the good eye to ensure that it halts any progression ? Or wait until it progresses a bit and then make a decision ? Doctors didn't say anything to me or provided any advice because there is next to zero astigmatism. Any thoughts ?

3) I am managing well with my glasses and have a good vision with both eyes and have been advised to stick to these which is my preference. Can anyone tell me if th vision is likely to deteriorate further on the cxl eye or improve over a period of time? The doctos also told me that have to wait for 12 months before deeming cxl a success or a failure and to see true results ? Any thoughts on this ?

[CrippsCorner]

1) 6 months is indeed the norm. I think I was increased to 3 months when I was looking to get CXL done

2) The million dollar question. You may want to read my own thread about my experience on this... I chose to go ahead and get my good eye done to stop it becoming as bad as my bad eye. However unfortunately I had complications and right now my vision is awful in my 'good' eye

3) I believe waiting 12 months is just because CXL actually thins your cornea to begin with, so any scans soon after don't give a 'true' result of what the procedure has done for you. My eye that was done successfully had a change in prescription after 3 months (which is the normal time scale to get a new set of contacts or lenses for glasses) and I can tell you my astigmatism was reduced to almost half of what it was... I'm very happy with that one, it's the best I've seen out of that eye for years

[chursy]

2) hmmm I am going to wait for it I think and see if the eye shows any signs of progression to begin with and get it done privately as have insurance so no waiting around for me..

3) I was expecting a change of prescription but nothing really happened to be honest. All I was told was my astigmatism is about 7 in my left eye however current prescription provided is about 3 but my vision is very good with both eyes which gives me very good vision as in I can read the last line. However with the left eye alone I can only read the fourth and third last line. Should I be hopeful that eye sight will get better over the 12 months ?

[MattD87]

If you can read the fourth and third last line with your bad eye, I'd say that's very positive. If it improves that's a bonus, but even if it only stays where it is then you'll do just fine I reckon. Is that with or without your prescription?

You said you have no signs of astigmatism, is that to say they've scanned it and there's no hint of KC at all? If that's the case, in your shoes I'd wait and then zap it with CXL if it starts to show. I wouldn't want to risk complications, however mild, on a healthy eye that isn't showing KC. But that's just me of course.

I too have a thread you might want to read. I'll be doing CXL in my bad, left, eye in around 4 months, followed by my good eye. I have KC in both - moderate to advanced in left, without correction I can just about make out the third line on the chart, and maybe a couple of letters on the fourth line, but not with any confidence as there are letters all over the place - and mild in right, with which I can see to one down from the 20/20 line I think. My first thought was I'd wait and see how my right goes with six-monthly scans, but the consultant said immediately that CXL needs doing in both, so any decision was taken away from me really.

I regret not being more pushy at the opticians when symptoms of KC started showing around 5 years ago. My left eye would be in a much better state I'm sure. So that's frustrating but in a way I'm lucky the right one hasn't got bad in that time, so I'm hopeful of keeping most of the vision I currently have - barring any problems like poor Cripps has had to endure!

[chursy]

Good to hear from you Matt -yes that's with correction I can read. My right eye has KC but my optician said she wouldn't have picked it up if she didn't know that I had cxl done in my left eye. So in other words the condition is there but hasn't progressed or is not showing any signs of progression yet but the moment I see any I would be on the cxl wagon I reckon. In my left eye I had to get it done because I was close to the border line of getting the cxl treatment I believe it's deemed moderate. Thankfully it's all ok at the moment.

Good luck with getting the cxl, where are you getting it done you are brave getting it done in both eyes . What's the astigmatism like I both your eyes ?

[MattD87]

To be honest I don't know the readings. I know my right had no prescription at all for the past five years, but last summer there was a minor, 0.25 one or something along those lines. But I've definitely noticed an increase in ghosting in the last year (it's why I went back to the optician having previously been told I had astigmatism only) so I'm pretty sure it's starting to progress.

I was taken aback a bit when the consultant the other day used 'moderate to advanced' to describe my left, but the thickness was well within the limits.

I'm having it at East Grinstead in Sussex. Few months away now with the waiting list, but I've got to the point where I just want it done now haha.

How old are you, if you don't mind my asking?

[chursy]

I am 31 and based in haywards Heath, West Sussex but decided do get it all sorted in Moorfields through recommendations of everyone in the forum and was lucky as it was all taken care of by the insurance policy from work.

good luck with your surgery - I am not sure what time you having it done but I got home around 7 had a soup and slept. The next morning it was all ok with no pain and nothing stinging in the eyes. Have someone if you can to put the eye drops you get , makes life much easier!!! All the best dude and let me know how you get on

[MattD87]

Thanks my friend. I will update my thread I'm sure each time there's a development. Good to know there was no pain for you, and I'm hoping the Queen Vic is at least up to a similar standard as Moorfields.

My wife will hopefully agree to do the drops. She's squeamish about eyes as I am, but I'll just remind her of our recent vows - in sickness and health and all that!

[chursy]

Haha yes you better mate. It wasn't painful to be honest first day was a bit, but the pain is more like if you get soap in you eyes ok which is also exaggerating it. Just keep your eyes shut. I had really dark glasses got it from pound shop and put a jacket on my face on the way back in the car as you will be very light sensitive. When I got home just slept. Took the pain management drops only once before sleeping as they told me not to take it too much it's goingvto cause problems in healing at a later stage otherwise.but definitely get the mrs to do the multiple drops you will need your iphone alarm to remind you which one to take when !! . How much time have u got booked off ?

[CrippsCorner]

The first time I got back from CXL thinking what was I worried about! No pain... just went outside (with sunglasses on) and sunbathed for the afternoon. However after several hours pain did occur. It wasn't nice but I went to bed early and woke up fine the next day.

The second time I had CXL I came back with terrible pain, I literally couldn't even talk. My eye was throbbing, and it was like someone was trying to push my eye into the back of my head! One of the top 3 most painful things I've ever experienced (along with a broken nose and a dental cyst)

I'm not trying to scare you, but just saying every experience is different, and don't be disappointed if you do have a worse time than someone else did...